A carer of a person with dementia talks about his experience from Spain

Personal experiences of living with dementia

A carer from Spain speaks with the Spanish Alzheimer association, Confederación Española de Familiares de Enfermos de Alzheimer y otras Demencias (CEAFA), about his experience of caring for his wife.

Ten years ago, after a whole working life in a well-known furniture company, my wife and I decided to buy a house beside the coast, where we could spend the remainder of our days. We left behind a whole life, family, friends and began a new future, full of dreams and hopes.

At the beginning everything was o.k.: we loved the house, the weather was perfect, even our neighbours received us as if they had known us for a long time. For three years everything was great.

However, something began to change at the fourth year. My wife started forgetting the keys at home when we were going for a walk, she didn’t find her purse when shopping or left the cooker or the taps on. Now and then she got angry (I think with herself) and after a while she calmed down and acted as if nothing had happened. Sometimes she behaved as if I were a complete stranger to her. It was very confusing. At first, I didn’t think these things were particularly important.

During one of our regular blood pressure check ups, I told the doctor about my wife’s unusual behaviour. When I saw the expression of his face I realised that something was wrong. I couldn’t imagine what was going to hit me.

Several visits to various specialists followed, The worst of which was when one of the specialists asked me to go to his consulting room and with some medical reports in front of him, told me, in a hard voice: “I’m sorry, I’m afraid I have bad news. Your wife has a mental disorder, probably Alzheimer’s”. I felt a shiver down my spine while the doctor explained the disease to me. I could hardly understand what he was telling me, I paid attention to a leaflet that he gave me. It was about an Alzheimer’s Association, about relatives who were going through (or had gone) the same situation as me. I remember that when I got home, I hid all the reports the doctor gave me, I went to my wife, I hugged her and, holding back my tears, I told her that everything was o.k., that there wasn’t any need to be worried, that we would be always together just as we had planned when we retired and moved to the coast.

“Alzheimer”, what a weird word. I remember, when I was working, that I often used this word, in an ironical way, to talk about the suppliers who delivered the wrong orders to the company. Now, I regret having used this word in a disparagingly way. Now, I understand the real meaning that the word, “Alzheimer’s” conveys.

After this, the internet became my shelter and hope. I would spend endless hours in front of the computer reading and reading again everything about Alzheimer’s. I found an incredible amount of information, but this didn’t solve my doubts, rather it increased them. Then I remembered the leaflet that the doctor had given me and after thinking about it, I decided to give it a go and so I phoned the Spanish Alzheimer association (CEAFA). At the beginning, I wasn’t very excited about the idea of sharing “our secret” with other people; the fact that my wife was suffering from Alzheimer’s and that some strangers knew about it, that was something very shameful for me.

However, after my doubts, I went to the Alzheimer headquarters where I was given the support that I needed; not only information about the services offered but information on the disease itself and the issues which surround it. The Association understood me and this is what helped me the most.

To sum up, the Association encouraged me to share “our problem” not only with the family but also with our friends and neighbours. Then, soon I realised that my wife’s problem wasn’t the only case of Alzheimer’s in the neighbourhood. People, that I hadn’t met before and I hadn’t talked to (“What disgusting people they are!” I used to think), were going through the same “bloody” reality as I, every single day. How they couldn’t think it disgusting when they had that terrible problem in their own houses!

I remember one day, just before lunch time, I saw in front of my garden a girl running by, who dropped her shopping bag. I stood up to help her, I didn’t say anything: I simply showed her a friendly smile. She returned my smile and thanked me for my help. She told me that she was in a hurry because she had to go home to help her grandma to feed her grandpa……..who suffered from Alzheimer’s. At that moment I was in shock, I couldn’t react, and from that instant a strong friendship grew between our two families. How important is a simple smile!!

During the next two years I cared for my wife, whilst at the same time watching her deteriorate. At the beginning it was quite easy to help (taking her to the Association to take part on their cognitive stimulating activities) but she got worse and eventually she couldn’t go out of our home anymore. It was then that the Association sent people to help me with my wife. Apart from that, it wasn’t unusual to be visited by our neighbours, who helped us (with the excuse of saying hello). Those were very hard years that lasted even after my wife’s death.

I will never be thankful enough to all my friends for not leaving me alone during all those years. Even so, the pain of my wife’s death remains with me. However, I think I am lucky to be able to share my experience with all those people who are facing what my wife and myself had to face together. Now I have become a volunteer of the Alzheimer Association, which helped me when I needed it the most.

This article was first published in the Dementia in Europe magazine (issue 5, April 2010).